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View Full Version : From a 24/7 caregiver to loneliness


rekem
10-03-2007, 10:36 AM
For over three years I took care of my wife with advanced dementia at home. Recently, in order to get Medicaid approval, she was hospitalized and then transferred to a SNF - permanently. I visit her daily and after seeing her and the other patients in similar condition my emotions get the best of me and I'm get more depressed after leaving. I like to think about the wonderful times we had during our 50+ years of marriage but I can't escape the fact that she will never come home again.
I'm not asking for sympathy - just how have others have handled the transition from home to SNF, the depression and loneliness without the spouse at home. Greatly appreciate any and all suggestions.:confused:

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DGabriel10
10-03-2007, 11:34 AM
I am so sorry for you loss rekem. Yes, you have expeirenced a great loss and will go through the grief of loss. THe loss of your companion and your work. When the intensity of caring for your wife ended there was major adjustments for you as well. I am not a professional but my best suggest to you is to do what I have done since my parents went to Assisted living. Stay as busy as possible, remember that your loved one is getting the best care possible, and know that you did all you could for as long as you could. From there it takes time to adjust..... for both her and for you.

I wish you the energy, creativity, and good thoughts to get through this difficult time. You were blessed to have so long with your wife.

Love, Deb

tyty
10-03-2007, 02:17 PM
You do the best by the fact that you stay with she as long as is posible.
Loneliness will be when you will remain alone. Me wife died at 42 after 4 years of posible FTD&ALS, we do not have a clear DX. I stay with her except 10-11 hours/day when I must go to work and now i am alone. Try to stay as long as posible with your wife now, time is short.

savv55
10-03-2007, 08:55 PM
Though your situation is different to me as this is your life partner and the loneliness will be measurably worse than mine in the loss of my father (AD and mini strokes) and my mother now in a NH with dementia. I thought I would share some of my thoughts on this.

As my parents progressed through this disease, I often felt like they were already gone, even when I was with them. They were not who I remembered, I could not have any quality visits with them any longer and I visited mainly from a sense of love and duty. When I was with them (now with my Mom), I do not feel uplifted to be there - just more sadness to see her sliding further into this disease. I missed and grieved for my parents when they were both still here and I still feel the sense of loss and miss my Mom even though she is not yet gone. When I'm not with her, I think of her and always feel some sadness. I should explain that I never had any children myself and I'm the youngest so I cannot fill my time with kids and grandchildren as do my siblings. I retired (early) just at the time that my parents were diagnosed so since then my life was/is them.

Do you have family support? If not, perhaps a support group could help you with your feelings of loss and loneliness. I agree with Deb that one must try to stay busy and engaged as much as possible. Continue with your activities and visit your wife for as long as you can, but forcing yourself to stay if it affects you badly is not of benefit to either of you. In time you will find a new routine and some acceptance of your life, though you will always miss your wife - now and later.

I wish you well as you complete this journey. Shirley

Raffeer
10-03-2007, 09:32 PM
Rekem-
I'm in the same position as you. Sole caretaker for a decade and, for a year now, a daily visitor at the ALF where my husband stays (I don't want to say "lives"). Well meaning friends have asked why I go since he does not recognize me. Frankly I go for ME. It makes ME feel better to see that he is well taken care of. Although the staff where he is are marvellous I have been able to sidestep a few problems because I was there. That is enough reason for me to make the daily run.
There is no answer to the feeling of loneliness when returning to the empty house. No way I have found to ease the loss. Dementia has been described as the "long good bye". It is, and from a selfish perspective, worse than the alternate. The "good bye" just goes on.
After this year I can't say it has gotten easier only that I have become more used to it. The obvious answer is to keep busy doing whatever. I've become quite active in our homeowners association. If that hadn't worked I was planning on going to our local hospital to volunteer there.
I wish I had concrete suggestions for you. Unfortunately I don't thiink there are any outside of the usual platitudes.
Forgive my ramblings but today was not a good day.

Martha H
10-04-2007, 08:31 AM
I think the idea of an 'in person' support group could be very helpful to anyone in your position. In this small town there is a 'widows and widowers group' - something like that must also be available where you live.

When my Dad died, my Mom became very active in a neighborhood Senior Center - she volunteered for various duties, went with the group on bus outings, led an exercise group, and pretty soon her life was full. Of course she still missed my Dad, but she had a new life after saying 'my life is now over" ... that active life lasted from 1978 to 2006, when she had to go into a nursing home.

I highly recommend to anyone who lives alone, as I do, that you get involved in outside activites. In my case it is the local library, my church, a neighborhood group, and going to a swimming pool regularly. Get up, get outside - do things. You may not feel like it, but after forcing yourself to go a few times, you will begin to make friends and enjoy it.

I wish you much joy in life - the sadness gets less, joy can come in again.

Love,

Martha

Beginning
10-04-2007, 08:45 AM
When my Mom passed after 50 years of marriage, my Dad sold the house and moved near me (where he met another lady, but that's another story--he told me that anyone who had a good marriage wants to have one again, and we decided my Mom would not have wanted him to be alone forever). He has had more than 10 full years since that time. He said the first three years were awful but now he is very happy with his life. Even though you intellectually realize that you're changing routines of a lifetime, including the loss of the one person who shared everything with you, and that loneliness is natural, emotionally it's a terrible time. My Dad and I agree with everyone who said that you need to force yourself to reach out to others, so that your life begins to fill again. Our local hospital and library have a lot of older volunteers, who form their own satisfying social network. Hospitals, churches and other charities can always use another pair of hands, eyes or ears. Look at your community college course offerings and consider trying something new that you've always thought about but never had a chance to do. Reach out to family members.

You will eventually establish a fulfilling (and not lonely) life. As the wife of a AD patient, I know that your life has been full as a caregiver but you have already been adjusting to loneliness through the last few years as you have lost the ability to share your thoughts and communicate with your loved one... You are now able to determine your own needs and are allowed to start to think of yourself again since your wife is receiving the best care possible at this stage of the disease. It will be slow, but you will get through it and find a life for yourself. Please let us know how it goes, since so many of us are going through the same process.

rekem
10-04-2007, 07:37 PM
DEB -

Really appreciate your comments about "staying busy." I try to during the day with various activities and visiting my wife - but at bedtime it just gets very difficult not to be able to hug her. I don't know if that will ever pass. I just keep hoping and praying for her. Thanks :) DEB.

rekem
10-04-2007, 07:50 PM
BEGINNING -

Thanks much for your reply - "reach out to others." I do have children who have provided support - my two daughters have a harder time than I do when they visit - my son is somewhat emotionally stronger - but it takes a toll on him too. I try to go to their chapel when I visit and pray that my wife doesn't suffer or experience pain. Maybe it helps me more than it helps her. In any case you are very helpful and should be given an :angel:.

rekem
10-04-2007, 07:59 PM
RAFFER -

I haven't heard such a appropriate comment - "the long good-bye - it justs hits home. I try to keep busy during daylight but a good nights rest escapes me so I just get up, get back on the HEALTH BOARDS and review the messages. I greatly appreciate that I'm not alone in my grief and your comments are sincerely helpful.

rekem
10-04-2007, 08:12 PM
SHIRLEY -

I didn't feel that I would get as many replies as I did - It is just very encouraging. I, too, see my wife "mainly for a sense of duty and love." I just wish the 'duty station' was at home. Your reply was very helpful as I can remember when we took a trip to Salt Spring Island and Vancouver Island and the people we met there were so friendly and courteous. Your city of residence gave me the feeling of the enjoyable experiences that my wife and I had together. THANK YOU SO MUCH.

 
 
 




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